New Here, Frustrated With No Answers

[Bradys mom]

Hi, the past few months, we have had several issues with my son, but no answers from the doctor. He is 10.5 months old. About two months ago, he began projectile throwing up several times a day, and at night. His pedi thought it was an allergy so she sent us to an allergist. The RAST test came back negative for everything. When we begain eleminating gluten, the vommiting stopped, he was in a better mood, and slept much better! He acted like a completly different baby!

He also had a week of severe diarreah (10+ times a day) and has had a cough that will not go away. I dont know if those are even related...

When we went to the allergist the allergy test just came back with an allergy to milk and eggs, so he did a celiac pannel and the celiac genetic test. We went today for the results and they came back negative for celiac. I am at a loss on what to do. He says reintroduce gluten and he should be fine, but my mommy gut feeling says thats not right to do.

Anyone gone through this or have any advice? Can the allergy test have a false negative? What about the celiac test? What would be the next step?

[carecare]

If you've looked into reading around on the forum you'll see that getting a negative celiac panel blood test does not rule out celiac. There is a high incidence of false negatives...especially in children.

Also, was he eating gluten when you had the celiac panel done? If not..then it was useless to get. You have to be eating gluten for up 3 months before getting the celiac tests done or the results will most likely not show anything.

You could do a trial of reintroducing gluten and see what happens. If you see a reaction...then you know for sure it's the cause and you can stop.

[eatmeat4good]

False negatives are very common.

Allergy tests are not 100% reliable.

Some say they are not very reliable at all. Sometimes you can only find out your intolerances by avoiding them and re-introducing them just like you did.

Your baby's diarrhea, persistent cough and bad mood could very definitely be related to gluten.

My son had those issues when he was a baby. The cough that would not stop was eventually chalked up to asthma, but if I were as insightful as you are, I would have eliminated gluten. When my son was 15 he went gluten free, we both did in fact. His persistent cough and asthma and bad moods went away...along with leg cramps and unexplained anemia....but it was 13 years longer figuring it out than it should have been. He is very healthy now. What a different childhood your son will have. You are right to trust your mommy instinct. I'm curious what made you think to try eliminating gluten? But I do know the elimination and challenge like you did is 100% accurate no matter what the Dr.'s or the tests say.

[Mommy2GlutenFreeChild]

Always listen to your instinct. My son had problems from birth (Oct 2005) with getting sick and constiptation. We were given every excuse in the book. First it was the formula, then it was being introduced to new food. Next we weren't giving him enough water, and then the excuse was that he was fighting potty training and that made him constiptation. He would get so backed up he would get sick. Then in Dec. of 2010 he had gone 4 weeks without a bowel movement and was totally sick at the ER. Finally his Dr. said "hmm maybe something is wrong" and started running test including the test for celiacs and that was only after I put my foot down and said you need to find out what is wrong.

If you think there is something going on, follow your instinct.. we as mothers have those instincts for a reason.

[T.H.]

He says reintroduce gluten and he should be fine, but my mommy gut feeling says thats not right to do.

Anyone gone through this or have any advice? Can the allergy test have a false negative? What about the celiac test? What would be the next step?

Obviously, there's the 'on or off gluten question' that's already been mentioned, but another thing I'd ask:

Did you tell the doctor about the symptoms, and that they went away when you eliminated gluten?

This last one is really important, IMHO, because it's a good sign of whether your doctor is worth, well, anything, really. Did he listen to what you said about your baby's experience, or did he ignore that and simply go by the test when he told you to go ahead and feed the little one gluten?

My son had horrendous colic when he was an infant - he literally screamed 20 hours a day, sleeping in 5 minute intervals and ate the rest of the time. It was hellish. At the doc's appointment, I was trying to tell them how much he was crying, but they weighed him, saw that he was gaining weight, and said it was 'just colic.' As long as their tests looked good, they weren't listening to what OUR experience actually was.

It turned out my son was reacting to the iron in my prenatal vitamins, and when we stopped the vitamins, the screaming went WAY down.

We ran into this with two more pediatricians (we moved a lot) when he started reacting to dairy, as well. We also ran into it when we realized he had issues with gluten - he, too, tested negative (but at an older age - 8 years). But off of gluten, his symptoms go away. The longer we keep him off gluten, the more I notice he reacts, just like his diagnosed-celiac sister.

If one has a little one who is having trouble with gluten, especially, we've discovered that it is so important to have a doctor who looks at the experience, not just the tests, because allergy and celiac tests can have so many false negatives. And the fact that there is such a thing as non-celiac gluten intolerance, which can't be tested by anything other than the patient experience, period, means that the docs REALLY need to be listening to us rather than pinning all their advice on a single test.

What you want to do next depends on a few factors. You could pursue more testing now. You could take him off of gluten, if you're comfortable it's an issue, and pursue testing later - there look like there are a few new kinds of tests in the works that don't involve harming our kids badly enough that the test can detect the damage and come out positive. They aren't approved for testing yet, but within a few years, it might be a possibility.

One I've heard of recently is actually introducing gluten TO the biopsy (if I understand right), and the sample will react. But at the moment, that is a very challenging test, so most labs couldn't pull it off.

If you have a doc who is willing to say your son is gluten intolerant, based on symptoms resolution, that would be good. It can be tricky avoiding gluten in the school system without a diagnosis or doctor's note of some kind.

[Bradys mom]

So I dont know how to quote on here yet, but thank yall so much for yalls imput. So many of the issues sound very familar to us (colic and constipation as a newborn!)

To answer the questions, he wasnt eating gluten for the test (had been off for a month), and I wish I would have researched it before we did the test.

When all of this started happening, his pedi said to try to eliminate any allergens from his diet. He refuses to eat table food, so he made it easy on us- all he was eating was fruits, veggies, puffs, and crackers. I elimated the puffs and crackers since he had been on the stage 2 foods for a while and he was still sick. I knew it couldnt be the veggies, so I stopped adding cereal to the food, and once I did that he was a whole new baby! He was already on hypoallerginic formula so we knew it was most likely not that.

As far as the question about the dr, our pedi is amazing. She realized even though her test came back negative he still had an issue going on. Our allergist on the other hand told me, "hmm... thats weird, i dont know..." He completly ignored my expierence and told me to "look at the test results, he should be able to have gluten" He also told me that the asthma symptoms were because he is in daycare (even though he has been in daycare and never had a problem.)Also, he seems to think that the vommiting is not an issue if he is gaining weight.

Thank yall so much for sharing yalls expierence. It makes me feel right about following my instinct even when the dr thinks its stupid to do. I dont think I want to reintroduce gluten, just because he is doing better. I also cant imagine putting him through more testing right now untill he is older or they have less invasive test (we just got done getting tubes for his ears, so poor think has gone through alot already!)